Our daughter Hailey was diagnosed with Leukodystrophy in 2011, a terminal brain disease. There is no cure or treatment. In January of 2015 she had a Pacemaker placed. There are medical bills, prescriptions not covered by insurance, Dr. Appointments out of state, and surprise expenses that would take a toll on any family. One way to share our story is to share jewelry we created together. There are many places we want to take her.
Each necklace signifies a Hug for Hailey.

Sunday, July 6, 2014

Sharing Hailey's story and her hugs.

We LOVE our Make a Wish family and Hailey lights up whenever you mention anything Make a Wish. We have always said that we are here to help in any way we can when it comes to helping other kids get their wishes granted.

We were very excited when Hailey was asked if she would represent wish kids at a check presentation from Conifer Health.

The presentation would take place at the Venetian Hotel and Casino and we proudly wore our Make a Wish shirts. Yes you get lots of stares and sad faces as you walk by, but that's just because people are only seeing the one side of the story. There are other people who will see you walk by and wave hello, or give a smile, even a high five. Those are the people who know how brave these kids are and how at times, life can be very rough. These kids need the positive gestures and Hailey is a child who loves to share her story and her hugs.

The check from Conifer Health given to Make a Wish Southern Nevada!

After the check presentation we shared a little bit about Hailey, her disease, her wish, and how we have been impacted by the Make a Wish Foundation.

We remember that when we were in the process of deciding what Hailey's wish would be, we were in what Doctors told us was a "time crunch." Doctors told us that Hailey was at the point where things were just going to go downhill and Hailey would get worse and worse. I was so apprehensive when it came to Hailey getting a wish, but it turned out to be one of the most memorable and happiest week of our lives. Seeing Hailey give every character she saw a hug really changed something in her. Hugs are good for you and Hailey LOVES them!

When we met all the people at the presentation from Conifer Health we wanted to make sure that they new how important Make a Wish has been to us. I told them that they could read all about our trip and what we did and how it has impacted us on our blog. I do very well when it comes to talking about Hailey and what we've been through with the misdiagnosis, traveling to different states to find the right doctor, hearing and learning about diagnosis, Leukodystrophy and how there is no cure and no treatments, but when I talk about our wish trip I get very emotional and I have to stop before I cry so I tell people to read about it on the blog. We wanted to give out some Hugs for Hailey bracelets as a small thank you.

Hailey gave everyone a bracelet and a hug!

A few days letter I received an email saying that Hailey had made a huge impact on everyone from Conifer Health and there was even an article published that mentioned Hailey.